Mary M

Know you are in the right place..regardless of the "diagnosis". This forum will be your lifeline and your knowledge base as you work to learn more.

Our dd12 had the 5-day burst prescribed by Dr K. We saw lovely improvement 3 days after the burst then on day 4 after the burst my dh and I got the flu and we experienced the biggest nightmare week end (days 4-5-6) of our lives, day 7 dd broke out in scarletina rash for a week and then we had IVIg on day 14 after pred burst. So I can contribute little of value as her body was a train wreck during that time. Mary from Michigan

Impressive total especially since it was a holiday week end... oh, but alas perhaps PANDAS families don't get a holiday week end?!

I like the analogy. I played center in powderpuff football...you know I recall being pretty bruised up during those days. Must be a "turning back of the pages" for the me. Thank you for the suggestion to re-think the containment hold strategy. I was using it upon the recommendation of dd's psychologist, and since I knew about how to use it, I thought it made sense. But I would say it only exacerbates the fight/flight response to a higher level and obviously puts me in harm's way. Thank you everyone for your responses to my concerns via the forum and PM's. Mary from Michigan

Perhaps your church could also provide meals upon your return. My mom is doing that for us...I can't take the time or energy to cook right now. It would take on e thing off your plate during the post ivig period. As I'm sure you've read, the post ivig period has it's challenges too. I do not say that yo scare you, just to prepare you. Knowledge is light, walking in the dark is dangerous...without this forum we would be in perpetual darkness, stumbling and falling...we have each other, we will find the light. Mary from Michigan

I know I'd be willing to forego my privacy (and my family's) for some of these answers. I know the "institution" requires privacy but if you could see what I look like today, bruised from head to toe, you'd understand why privacy is of little solace to me. Answers are the key now.

Would it be useful to know CAmKII #?

Did she exhibit this sort of behavior before IVIG? My daughter's rages have gotten much, much better since IVIG, but my arms and hands especially still bear a multitude of scars from her past life, so I understand how difficult this is. We do have a script for valium, as needed for my daughter. She still does a bit of SIB, but not nearly as bad as it used to be. But, sometimes, I give valerian root instead of valium and it does help as well. The other thing I have recently been trying (because I read a study that it lowers CamKII activity) is taurine. I think that is helping as well. My daughter is almost 1 month out from her 2nd HD IVIG- still using ibuprofen, still using valium (although much less than pre IVIG). We're scheduled for another one this Thurs & Friday. I don't know of any psych meds that would help. None of them helped my daughter, and we've tried a ot of them. At this point in your daughter's care, they would probably make it difficult to see what's going on with her. My daughter gets horrible, horrible yeast from augmentin- but I always know, because it shows up vaginally. Don't know how those w/ boys figure it out! We use diflucan for that, but diflucan does create some difficult behaviors for about 24 hours. She's on zith most of the time, which does not seem to cause the yeasties nearly as much! I wonder if prednisone might help? Oh, I just remembered- the other thing that seems to really help is cod liver oil. Once a week I give her 100% of the RDA, then the rest of the week, just 50%. CLO can get toxic if you overdo it, because it builds up- the body does not flush excess. Our dd demonstrated extreme rages during both of her major exacerbations (age 7 1/2 and now age 12) but she only started to become physically violent to us in the weeks just prior to IVIg and now after IVIg. The violence level now is just beyond me. Her voice, her face, her demeanor...it's like something from a horror movie (yes, Linda Blair does come to mind here). There used to be purposeless flailing but the purposeful hitting, that's what's really problematic now. We were using valerian before the IVIg as a sleep aid but I will try to get her to start taking that again. Once the sleep issues subsided we cut out the valerian. Thank you for that suggestion. I only thought about it for sleep and now am reminded it was supposed to be calming for more than sleep. I have prednisone from Dr K for the side effects of IVIg. Dd refused to take them when she was vomiting and had the head ache so maybe he'll let me give her those. I haven't heard back from Dr K yet. Thank you, peglem, for your help.

I do not want to be negative. I have avoided posting since IVIg just so I wouldn't be negative. We are 19 days post IVIg for our dd12. I have been scouring the forum about the post ivig period (after reading the posts I am amazed that any of us thought it was a good idea to go ahead with IVIg) but that said, I believe you all when you say it takes time (8 weeks is really gonna be tough!), I believe Dr K's "suicide time" description, I believe that what I'm seeing is a sure sign that her body is attempting to heal but I am bruised and battered from head to toe (emotionally, yes, but I'm really talking about physically here). How do you prevent the abuse and violence? I worked in a child/adolescent psych unit 20 years ago so I was trained in containment holds but we never had to really use them but I have to use them daily here at home. I will not abuse her back even though she begs for me to do that. I will not tell her I hate her even though she begs me to do that. During this time post IVIg do I succumb to the OCD and do everything the OCD wants me to do until the healing period is over (I have been refusing OCD's requests-no matter what you all say I still won't abuse her or say I hate her--but the other OCD demands do I follow them or ignore OCD's rules and controls)? We have been using ibuprofen since the end of May. She's on no psych meds. Is there a psych med we should request? A sedative? I just sent an email to Dr K but what can he do about any of this? Does she need a different abx? An additional abx for antifungals from the augmentin? How would we know if she needed this? Mary from Michigan

Johnsmom, I am so sorry. I wish there were answers to your questions..there seems to be very little conclusive information. Please know you are not alone in this.

Well, I'm just thinking..the next time I have children I'm moving to Montana..tee hee! Mary from Michigan

Wonderful...and it always fascinates me to hear everyone's stories. Mary from Michigan

We are 18 days post IVIg with Dr K and our dd12 is sitting in front of the TV right now (going on 4 hours now)...moping for the most part which, I must admit, is better than yesterday and Thursday when she beat me and screamed for hours at a time. We have been invited to 2 parties today, she was unresponsive and shrugged when I offered her those choices. I was thinking last night that this is a turning back the page issue as we have seen this before but how does one ever know, really. SInce the IVIg I have tried really hard to create outings just to get her (and me) out of the house. Some days it works, others not so much. I wish I had more suggestions...I am putting all my trust in that moment when the healing shift occurs...1-8 weeks, 3.5 weeks...not much of an exact science is it? At least we have each other.... Mary from Michigan

So sad...

Thank you Vickie. I will continue to help our supporters..I owe them all so much for helping our cause get through this process.

My dd12 had the face swelling long before we ever gave her ibuprofen. So much to learn and understand and piece together.

Ugh-the page changed just after 12:00. Do we really have to wait until the morning?

It's 11:59...please...the celebration will soon be upon us, right?!?!!!!!!

Our dd12 has the face effect too. Our family has noticed it as well. Don't know the root cause but it is definitely associated with an impending explosion of symptoms. I tell every Dr that we see about the physiological change that directly precedes the outburst. No one has explained it other than our ped who thought it may be related to the fight or flight reponse...a primitive reflex response...and that's what a feels like when it's happening, too.

Nice work!

Bump-I don't want to miss anyone if this gets too far back. Personally, I know I am not on the forum daily right now so I want this to stay in the top page for a little bit. Thank you, Mary

Call him right away. See if they can get you in for a consult. Dr K is going to be out of town for the OCD Foundation conference toward the end of your Chicago trip dates. I believe Dr K would appreciate meeting you if it is at all possible.

It could mean nothing at all to the diagnosis. Some kids do not present with elevated titers and yet still have this disease/disorder. When our dd was 7 and in extreme exacerbation her ASO and AntiDNase B levels were "undetectable". We went 4 years without an issue and now over 4 years later they are both elevated and she is in extreme esacerbation every day. I don't understand the science of it but the ASO and AntiDNAse B levels seem not to be too predictive or diagnostic for PANDAS.

Thank you everyone for you support. Been home almost two hours but dd is still in the car. She slept 4 of the 4.5 hour drive home but now has had nothing to eat or drink since late last night. We have food and drinks in the car for her but she hasn't touched any of it. We are just sitting here watching the car. Only you guys would understand that that is not crazy. She was horrible when the infusion was over. Didn't want to leave the facility. Donna was amazing. Dr K loved her horrible behavior making us believe that it was a sign things were working. Every time I think this has gotten more surreal, something even more bizarre occurs. But on the a lighter, more positive note, the new tics from the last few days seem to have dissipated. So the rolloer coaster keeps on rolling...

So reassuring to know that there are options to help during the college years. Emmalily, I'm hoping you and my daughter (someday) will be well enough to not need such services but I'm glad there will be a program in place if need be. Thank you for sharing this...